Out of joint
Even the slightest movement can leave Debbie Rocke, 36, from Broadstairs, with dislocated joints
Gritting my teeth, I winced in pain as the doctor pushed my arm back into place.
The bone had come out of its socket, leaving me in agony.
But while most people would think this was due to a serious injury, like a car crash or a bad fall down the stairs, it was caused by simply lifting up the kettle…
As strange as it sounds, this was normal for me.
My whole life, I’d been in and out of the hospital getting my joints put back together after another minor injury.
I first noticed that something wasn’t right when I was a teenager.
My joints had become painful and weak, and I was always twisting my ankles or injuring my knees.
‘It’s just growing pains,’ my doctor had said.
But, finishing school and getting a job in a primary school, my joints kept aching.
In 2000, I gave birth to my daughter Chloe, and four years later, I had my son, Tom.
Over the years, I was constantly taking paracetamol and ibuprofen for the pain, but these were only ever a temporary fix. Being a single mum to two kids took its toll, and my pain became worse.
Then in 2009, I met Jim through friends.
We moved in together not long after, but even then, I was still in a lot of pain.
It felt like I was forever going back and forth to the doctors.
I took up swimming, hoping that it would help to ease the pressure on my joints, but by the time I fell pregnant again in 2011, I was in even more pain than ever.
Lifting the kids, bending down to pick something up, or even just stretching – the slightest pressure would cause my knees, wrists or shoulders to pop out.
Once I dislocated my finger just picking up a blanket.
Each time, Jim would rush me to the hospital and I’d wince as my bones were pushed back into place.
By May 2011, I was desperate for answers, so I went to see a physiotherapist.
‘You have Ehlers-danlos syndrome (EDS),’ he said, after examining me.
It was a very rare genetic condition that caused hypermobility in the joints.
And while there isn’t a cure, I was just relieved to finally know what was wrong with me.
Then in 2012, I gave birth to my son, Samuel.
By then, I was taking strong painkillers every day, but with the help of regular physio sessions, things started to improve.
Then one day in February 2016, I knocked my head on the car boot.
While most people might have just suffered a bruise, I ended up being bedbound for days, unable to walk or even sit up.
A scan at the hospital revealed that the EDS had made my neck unstable and the bones were compressing my brain, causing my legs to become weak, a ringing in my ears, and double vision.
Confined to a wheelchair, I had to take up to 50 tablets a day and wear a neck brace.
‘I’m afraid there’s nothing more that can be done in the UK,’ my doctor told me.
But, after doing some research found a surgeon in Spain who could operate on my neck – but the procedure would cost £60,000. So I started fundraising, and, thanks to a loan from my mum and dad, by April last year, I had raised enough money for my first bout of surgery. A year later, last July, I had a second op, this time on my spine. Today, while I still rely on a wheelchair from time to time, I’m a lot more mobile than I used to be. My joints still dislocate sometimes if I’m not careful, but I’m learning to cope with it. I refuse to let my condition stop me from being a good mum. After all, my family is my reason to keep fighting.